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May 2020 Chemo Starters

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Re: May 2020 Chemo Starters

I think it will take more than a bit of make up to make me look human . 🤣

Thank you for the advice though . ❤️

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Re: May 2020 Chemo Starters

Thanks Shi, and duly noted! Earrings too.... x

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Re: May 2020 Chemo Starters

Get your lippy and make up on before the clip ❤️ I didn’t and ended up looking like action man, looked better once bit of lippy and face on 😘 just a tip ❤️ It’s hard but empowering ❤️ 💕💕Shi xx

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Re: May 2020 Chemo Starters

We bought some clippers online to do my husband’s hair and ultimately mine. Another unforeseen side effect of lockdown - nearly all the clippers were sold out!  Daughter did my husband’s hair at the weekend, looks a bit convict-like! Dreading the moment but suppose it’ll come soon

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Re: May 2020 Chemo Starters

Hi Tricia

Oh, good luck with that tonight! I've seen lots of lockdown buzz cuts already... I've decided to order some clippers and just go for it when they arrive.  Let us know how you get on! 

Trish x

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Re: May 2020 Chemo Starters

Hi Trish

Im in the sane position as you. Thick hair needing to cut it before Chemo.

Only difference . I have a husband that can’t wait to help me cut it. 🤦‍♀️. If you could see how he prunes our trees . Not good. I know behind his enthusiasm he is very worried for me. 

I bought clippers ready. Shaved my husbands to get the hang of them. I’m sure the “hacked look” will be quite fashionable this summer. For Chemo and non chemo people 🤣.

At least no one will see us as we will be shielding . Summer means big hats too. 

Just go for it Trish . I’m doing mine tonight after a drink . X

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Re: May 2020 Chemo Starters

Oh, I've just come across the Cancer Hair Care charity who are offering Hairloss Help at Home support. Here's the link, if you're interested:  https://www.cancerhaircare.co.uk/hair-loss-help-at-home-coronavirus-support/

 

Trish x

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Re: May 2020 Chemo Starters

Good morning everyone from sunny South Shields

I now have my starting date for chemo: next Wednesday, 13th May. I'll have a pre-meeting by phone with the nurses on Monday.

So here's my question - I have chosen not to do the cold cap in order to minimise my time on the ward, so I do expect to lose my hair. I have a lot of hair! It's in a bob, not too long but very thick.   I had a plan in place with my hairdresser who was going to cut it into a nice short style before I started treatment and then shave it off for me when necessary.  Well, that's all out of the window now.  I live alone so I'm going to have to manage this for myself somehow.  Can anyone link me to any good information about how to do this?  If I'm going to be ordering clippers then I need to do so asap I guess.  Is anyone else dealing with this alone?

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Re: May 2020 Chemo Starters

Hi, I thought I'd pop in to this thread as well as the April one since I started chemo on 28th April.

I'm Steph, diagnosed TNBC in Feb, I've had a lumpectomy with clear margins and SNB with no node involvement.  But being triple negative chemo is a given.  I'm having trouble with mood at the moment - feeling very low, just sitting at home waiting for my hair to fall out.  I'm still terrified about what lies in store on the chemo journey but I think lockdown/shielding is going to be my biggest challenge.

Nice to 'meet' you all (hi Fiona from April!), sure we can keep each other going somehow.

xxx

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Re: May 2020 Chemo Starters

Good luck for today Daisy. 

We are all here for you ❤️

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Re: May 2020 Chemo Starters

Hi Everyone,

I'm due to have my first chemo today at 1pm. I had a mastectomy in February and had waited 10 weeks before getting my pathology results. The surgery had took it all away and I had 15 lymphnodes removed as cancer was in 2 of them. I was so resistant and adamant that I wouldn't have this dreadful stuff pumped around my body but in the end the fear of it coming back was too much. I hate being centre of attention, I haven't told everyone I had cancer as I don't want to be treated differently and I am quite shy so the thought of losing my hair has been really hard to deal with. I've ordered head coverings and also a wig to prepare myself as the cold cap isn't offered in my hospital. The only good thing about lock down is I don't have to face many people.

I'm hoping to still be able to do some work for my company from home to help me focus and I'm doing everything to keep as well as possible. It's great to express my feelings on here as I find it hard to talk to family and friends.

Good luck everyone. I see today as one down 5 to go ❤

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Re: May 2020 Chemo Starters

So I’ve had 2 chemo sessions now, when I go in I take a plastic wallet with all my notes and stuff in. I’ve been given the Macmillan treatment book so my nurse and I have been filling it in and I take that with me.

i take my bobble hat to wear home as I’m doing scalp cooling and after that you’re rocking a fetching wet look hairstyle from the water and conditioner they put on it to protect it. My hair is also cold and wet from scalp cooling so bobble hat helps to keep my head warm on the way home. 

I take a bottle of water and snacks. I get lunch on the ward but it’s never enough to sustain me! I also take my iPad with a bunch of stuff downloaded on Netflix to watch during infusions. I’ve taken my book but not got round to reading it yet 🙄 I take a charger for phone / iPad just in case. Lip balm and hand moisturiser. Oh and my fluffy socks to keep my toes warm! 

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Re: May 2020 Chemo Starters

Ask your teams for difflam in your goody bags of meds (2 bottles usually lasted a 3 week chemo cycle) slosh and brush after every meal, oral hygiene very important especially as you probably can’t get in to see dentists now before starting chemo, you always used to get straight in and teeth checked before starting chemo, speak to your teams if you haven’t already on this and take their guidance ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Polly,

 

Welcome to the thread . 

Firstly I’m due to start my treatment in the next two weeks but they could just phone and say come in tomorrow. It’s good to be prepared. 

They will talk to you and go through all the medication you will be taking home . 
They will be monitoring you closely but most go home after 3 hours or so. I don’t think you need to take much . ( I’m sure the ladies who have started treatment will be able to give pointers)

I was told to rinse your mouth out with cooled boiled water with a splash of salt. 
There are mouth washes out there which are recommended . Your breast nurse should be able to advise. I bought a pack of soft toothbrushes as your gums get sore. 

Bought chemo hats for when the hair falls out . I also bought ginger cake, ginger beer, ginger tea and lots of root ginger incase I feel sick . I bought peppermint tea for tummy . 

I like being prepared 😊🤣

 

Lots of Love 

Tricia X 

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Re: May 2020 Chemo Starters

hey everyone,

I am surprisingly starting chemo earlier than I had first thought. I thought my appointment on Tuesday was only for consent but I’m being admitted to the dayward after it.

Anyway, my question really is what do I need to do to prepare for this? I received a txt from a friend suggesting oil pulling for oral hygiene. Had anyone heard of this? Does mouthwash not just do the same thing?  Also what do I take with me?? I don’t want to be the eejit that turns up with a suitcase 🤣Any tips would be helpful.

Also, I don’t often comment but I do love the support that this forum is giving myself and others xx

 

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Re: May 2020 Chemo Starters

Hi Trish 

I’m Tricia 😊. I just reply to the last message . 

You are at the same stage as me. I’m just waiting for the letter to say chemo will be starting . 

The breast nurse keeps checking on me by phone . I think she may think I’ll do a runner . It had crossed my mind.

 

Welcome to the group . ❤️❤️❤️

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Re: May 2020 Chemo Starters

Hi all.  It's good to meet you and to have some company on this 'train journey that none of us wanted to board', (thanks for that, Fiona!).  I'm Trish, and I was dragged onto the train with a diagnosis of invasive lobular breast cancer on 18th February. I had a lumpectomy on 25th March: Grade 2, lymph node positive, ER+ HER2-ve. I had a phone consultation with my oncologist on Wednesday last week, and she said I'd start chemo in about two weeks - just waiting for a letter that will give me the exact date.  I'm very apprehensive, especially given the covid situation, and am just working on taking things step by step, day by day.   It's been good to hear on here from others who have started or been through their treatment, and I totally get the comments about fear of the unknown.  A friend of mine who was treated for cancer a few years ago said to me that the apprehension and waiting was often much worse than the interventions themselves. I think that has been the case for me so far.   

I'm looking forward to getting to know you all and finding some mutual support in all this.

Trish x

By the way, I couldn't find a way of starting a new thread on here - just clicked reply to the previous message in order to post this. Was this the right thing to do? Tx

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Re: May 2020 Chemo Starters

Hi Clare

Just to say Thank you for posting an update . I was really struggling in thinking this is never ending and to read your message really helped .

I just wondered how do you private message. I clicked on your name but couldnt find a link.

Thanks Daisy xxx

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Re: May 2020 Chemo Starters

You take it easy fidget . 😘

You sounds as if you are taking it all in your stride . Have a relaxing weekend .

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Re: May 2020 Chemo Starters

@rubyrose Hey - you're not being nosy at all. Umm, I had nausea on Wednesday and Thursday, but no vomiting. Everything else ok so far. Been so so sooooo sleepy today! Barely gotten out of bed.

 

The nurse was sitting with me pretty much whole time as the EC is given via bolus, so not much time to do anything really!

Hope your weekend is also going well xxx

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Re: May 2020 Chemo Starters

Hello Everyone

My name is Clare and I'm gatecrashing this thread! I promise not to monopolise this invaluable forum so just popping in.

I am 6 months post chemo following a mastectomy last May, almost 1 year with my new boob!!! I guess I'm on the other side, when I was starting out on this journey I couldn't imagine reaching the other side it felt light years away. I hear you and I feel all of your anxieties, fears and concerns. It's bloody tough!

Unfortunately the cold cap was not successful for me but my goodness it was amazing for some of the people on my ward so please don't be put off if this is your choice.

Anyway why am I here as I rarely post on the forum (it continues to be my go to for all questions as theres always answers here). I know firsthand that preparing for chemo is costly both emotionally, physically and financially... it's all consuming. I have lots of chemo hats, scarves and cotton beanies that I'd like to gift to anyone who may need a little help.  Please private message me and I'll pop them in the post. 

Stay safe everyone, you are amazing, beautiful, courageous and you are in my thoughts. You probably won't feel any of these on somedays but trust me you are! We are now in a girl gang that we never asked to join but we are connected even though we'll probably never meet, speak, text or message... we are intrinsically linked through our journeys.

Xx

 

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Re: May 2020 Chemo Starters

Thank you Laura ❤️

Have a lovely weekend 

Tricia X 

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Re: May 2020 Chemo Starters

Hi Shi,

Sorry I missed some posts including yours.

Pretty much what my nurse said. Temperature temperature temperature. Phone day or night . I will take your advice. 
Thank you ❤️

 

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Re: May 2020 Chemo Starters

 
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Re: May 2020 Chemo Starters

Hi Everyone,

 

Fiona thank you . We have a Maggie’s and I really want to touch base with them as I feel my husband also needs support . Oncology say they will answer all his questions if he rings but it’s more emotional support he needs.  I was encouraged to go through Macmillan for financial advice but I will try Maggie’s. 
I wouldn’t mind a blue badge . 😊. Not that we will be allowed out of house arrest to use it 😂

How are you today? Any vomiting ? Bowels ok? 

I’m going to have to give it some thought for my song to add to the playlist . Great idea though . 

What did you do while you were having chemo? Read a book? Sorry I’m being too nosy. 😊

 

Have a lovely weekend . 

X❤️❤️❤️❤️❤️

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Re: May 2020 Chemo Starters

Hi Tricia - just a thought, but try getting in touch with your local Maggie's? They're shut down physically, but I think most of them are running limited services via remote? The welfare guy at my Maggie's is helping me sort benefits and claim PIP and even a blue badge (horrified at prospect) should it come to that! They do have a main helpline number too....if I can find it will pop it on here later.

 

Laura, what a sweet post! Yes, it's difficult to juggle what we're coping with and there are shades and nuances in everyone's stories.

I'm reading the "Book of Joy" by Dalai Lama and Bishop Tutu.....in some ways not the easiest read just now, but in other ways it absolutely is! I love how HHDL frames suffering not as a comparison but as a unifying force. Anyhoo, maybe a bit heavy! I think what we are providing here is fab (IMHO) a space to go "bleeeeeurgh, grrrrraghgle, fraggle-frock!" And have that be ok. And to step away for self care (as you did yesterday) and coming back when we can. And I think it's a great thing to ask too! 

Maybe we could come up with the May Chemo playlist to beat all playlists? I nominate Anastacia - Army of Me!!!

 

Fiona x

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Re: May 2020 Chemo Starters

Tricia ❤️ Follow your teams guidance, always ring your rapid response, keep check on temp, if your wee burns but no temp, rapid response it’ll probably be a uti and will need antibiotics, if you get thrush mouth again rapid response it’ll need antibiotics, get fluconzole don’t let them fob you off with drops, if your antisickness meds don’t work ring them don’t try and battle through, they will weak them. Keep  at least 2l of fluids flowing through during chemo ❤️ Step by step you will all get through together 👭in your own way and in your own time, there are no right or wrongs, do it your way and how you want ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Ladies,

how are you all today? Apologies I was quiet yesterday, I took some time out whilst having my treatment. It was a longer day than I was expecting as it was cycle 2 for me, but I got to meet my oncologist face to face which was great. I love her! She’s brilliant. But yeah we didn’t get home til 8pm last night and we were both completely worn out. Quick dinner and crash out last night! 

How’s everyone doing? I was thinking yesterday whilst I was in the hospital, it breaks my heart that so many of you terrified of the road ahead and the journey were all departing on together. I know that this a really difficult and unsettling time, with even more stress and worry because of other events happening in the world, trust me I feel it too, but is there anything we can do on here to help those of you who are struggling a little more? What can we do to lift spirits? 

Hoping everyone is having a lovely evening and has a restful weekend.

Laura x 😘🌹

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Re: May 2020 Chemo Starters

Hi Shi,

I have them on my to do list. I’ve never claimed anything in my life before. I guess I’m subconsciously putting it off. 

I’ve been making cotton masks with room for filters for friends and family while in isolation and asking them to donate to Macmillan. I started up a JustGiving page. Not exactly in  Captain Tom’s league but it helps me feel useful. 

I found my employer didn’t pay me my isolation pay. I had to isolate for a week before my operation. I sent the form to them. I don’t have the fight in me to chase them up but I know I have to. I could just do without it . 

On a positive note I had a follow up call from my oncology nurse making sure I understood everything the oncologist explained to me the day before. 
I now await an appointment to start my first course of Chemo. 

Tricia X 

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Re: May 2020 Chemo Starters

Tricia if you can speak to Mcmillan, there have been others who have got financial assistance their Mcmillan teams have helped. You could ring the number at the top here too and ask what forms and how to do it ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

Angie1973 - May Chemo thread here if you are starting in next couple of weeks ❤️ Lovely gang on here will 👭you 💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi ,

I have been told to shield myself and not leave the house. My husband has also been told to shield with me. We can walk the dog in the field opposite as long as we wash our hands and not meet anyone on the way . I have arranged delivery of food. Also have a network of friends to leave stuff on the doorstep. 

I’m  putting a laminated poster on the door explaining the situation so no one knocks and expects me to answer until they are a good distance away . 

My concern is , when they lift the lockdown . I guess we will deal with that when it comes . 

I am a carer in the community and was told by my oncologist that even without covid, I would not be allowed to work until after treatment had finished. 

Not sure what we are going to do financially.

Lots of Love

Tricia

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Re: May 2020 Chemo Starters

Hi everyone one on here , hope your all ok . Just wanted to ask what advice you’ve all been given whilst having chemo as regards self isolation and shielding along with other members of your family at home please  xx

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Re: May 2020 Chemo Starters

Hi Tricia

I'm a little better this morning (touch wood!) And my wee dog (bless her!!!!) Is curled up beside me and won't leave - Scottish Govt haven't issued guidelines on social distancing from dogs 🤣🤣🤣🤣

While I don't disagree with your husband - they're your scars, and maybe feeling all the feelings around that (loss, anger, disgust, denial, whatever, whatever) will enable us to fully embrace them as part of us and our journey? This is a conversation I'm repeatedly having to have with my partner. I love her to bits and she's doing my freaking nut in!!!! I'm like, love, this is my journey. You're on the partner's journey and while we're heading in the same direction, you're driving in a different lane!! You cannot control or determine what will/will not help me. That's how she copes.....fixing stuff and being in charge.....AND she's not looking after herself! However......

Tricia, trust yourself. You do you in whatever way feels best. I got my head shaved (grade 1) at the weekend. It was a shock, but I've adapted now and I'm glad I didn't have to process that shock in the midst of chemo while tired/headachey/sick etc. And it's potentially a tiny bit of control. Not looking forward to eyelashes and eyebrows going! Quite looking forward to leg and arm hair going. Very apprehensive about public hair going....I think that may be quite difficult for me, but maybe not. Reality tends to be very different from anticipation so I dunno!

I've mapped out my treatment incl the days of lower immunity. It's all colour coded and everything! Nerd, you say? Me, you say? NAAAAAAH 🤣🤣🤣🤣🤣🤣🤣🤣

 

Lots of love guys

Fiona xx

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Re: May 2020 Chemo Starters

Hi Daffodil (what a cheerful user name - I like it!)

I think it's great to have a place where you can just let it go and say the things that are maybe too painful/scary to say out loud to loved ones.

I hear your fear and uncertainty. Eventually, I think I went into a kind of survivalist dissociation for the few days before.....not consciously of course but I think my brain went "ok Fiona, enough already!"

I think it's a good suggestion to see if you can wait till the day....and don't forget, you can try it and change your mind?

I'm struggling to decide on whether to go pre/post menopausal treatment (well, rationally I do know, but my heart is going no.....I don't want to close the door on my fertile years even though periods are a total pain in the.....well, everywhere!)

Don't feel rushed, if something doesn't feel right, find out how long you can wait before making a decision (I've got 6 weeks to weigh up the hormone thing!) ask questions, even if you've asked them a billion times before! Take notes, or ask the nurse/whoever to make notes for you.

There's no right or wrong - it's just getting through this in whatever way you can and that looks different for all of us.

Lots of love Fiona x

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Re: May 2020 Chemo Starters

Hi Sarah! 

Waffle on! I think there's a tendency for most to feel like we're doing that, but I view it as being better out than in, and also you never know what is going to be helpful for someone.

I'm really sorry that you feel misled and let down by the team looking after you ☹ The changing news will have been hugely unsettling at a very difficult time.

My team were really good in that they said from the outset, this is what we're hoping for (hormone receptive) but we won't know until lab results, and they gave me dates for those, when they would call etc. I do wish everyone could have that experience as it has made a huge difference to a very difficult journey.

It is good that they removed it all. My oncologist used that term too "as far as we know" and she explained that it's one of those times when there are no absolutes and hence the chemo etc.

Do you know if they removed all the lymph nodes in your operation? I don't know a lot about that tbh, so if you haven't already found out about Breast Cancer Now's Soneone Like Me volunteer service I HIGHLY recommend it. You get matched up with a volunteer who has had similar diagnosis/treatment but who also matches you in terms of interests or personality (as near as they can). My volunteer is fricking awesome and her phone calls (we usually schedule them for Fridays) have been such a lifeline. You can call the helpline for more information or it may be better to email someone.likeme@breastcancernow.org

Its lovely to have you on here...this is feeling like a lovely wee group!

 

Fiona x

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Re: May 2020 Chemo Starters

 

Hi Everyone,

Welcome all who have joined the thread in the last few days. ❤️

Fiona I hope you are feeling ok today . Don’t forget to drink lots of fluids. I’ve ordered everything ginger and masses of different water. Our tap water tastes yuk . Oh and my daughter who is a midwife/ genetic counsellor ( she shadows the breast nurses a lot) recommended ice pops / lollies for sore or dry mouth.

Stocked the freezer up. 

 

Ali I know what you mean about feeling liberated but probably sad at the same time . My husband says I should wear my scars with pride. I’m not sure if he expects me to get my blue boob out at any opportunity or he means I should be bald and proud 😊. I said to the oncologist that I’m going to shave my head. Her eyes looked alarmed . “ Oh no you can wait until the third week. That’s when it falls out”. Is there ever a good time to shave? I kind of want to preempt the hair falling out. 

I have my appointment in an hour ( phone) . I like the idea of mapping out the journey on a calendar. I will do that once they give me the timetable . 

Hope you all have a good day today .

 

lots and lots of love 

Tricia 

 

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Re: May 2020 Chemo Starters

Hi lovely

Ali here..I'm starting on 5th so close to your date. What type are you having?

Can you make the decision on cold cap on the day based show you feel or do you have to decide in advance?

X

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Re: May 2020 Chemo Starters

Hi everyone, I’m starting my first chemo on may 6th and like everyone, I’m frightened to death and can’t think of anything else my heart feels like it’s in my mouth and feel so sick which I’m sure everyone does but just needed to come on here and say . I’m also finding it all very hard to understand and can’t decide weather to try the cold cap or not .

xxx

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Re: May 2020 Chemo Starters

Hi Tricia 

 

That's awesome that you am have the sewing skills to make hats. There are some really fantastic materials out there. 

 

I'm also going to shave my head. We can think of how liberating it will be not to wash hair for a while! I have very long hair and it's super thick so I do spend a bit of time washing and straightening.  I am telling myself it will be liberating not to do that (although I will really miss my hair)

 

Xx

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Re: May 2020 Chemo Starters

Hello everyone,

I’m so glad to have found this little group. I’m Sarah, 37 and was diagnosed on 1st April. I had a mastectomy on the 16th so two weeks post op and feeling better each day though have a lot of swelling which is quite uncomfortable. I’m trying to focus in the positives and know I’m really lucky to be in Scotland in a rural area which has hardly any covid cases so breast cancer treatment is taking place as normal. I’m also really grateful that I’ve had my two children and been able to feed them as I wanted to, as this diagnosis would have been so much worse a few years ago.

 

I went for my pathology results this morning and found out I am stage 2a, the tumour was a grade 3 and as far as they know it was all removed. It was present in 2 lymph nodes so I’m due to start chemotherapy in two weeks time, it would have been earlier but the oncologist is on annual leave currently. I’ve to have 18 weeks of chemotherapy, FEC-T then FEC-D. I then start trastuzumab for 17 treatments then radiotherapy for 3 weeks then hormone treatment after that. I’ve worked it all out on a calendar and it will be the end of August 2021 before I even start the hormone therapy. 

I’ve been in denial too I think, I just kept myself really busy with my two children (4 and 1) until operation date and didn’t give myself time to process it. I was led to believe I would only need hormone tablets so today has been a huge shock. I feel like every appointment I’ve had I have had worse news than I was expecting and I try to be positive and hope for the best but then end up feeling crushed. 

I am terrified if I’m being honest but I suppose that’s normal coping with the unknown and the covid situation just adds another difficult element for everyone. Thank you so much to those who have shared their experiences already, it has been reassuring to hear that things haven’t been as bad as people were expecting. I’m just so grateful that this group exists. 

Sorry for the huge post and for waffling on too much,

 

Sarah x

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Re: May 2020 Chemo Starters

Hi Everyone,

 

I ordered a few hats from Amazon. I went for colourful ones. I may have a go at making some if I’m up to it. 

Ive decided against a cold cap . Husband is looking forward to shaving my head 😢.

At least I won’t have to worry about my roots showing during the lock down 😊

Have to find a positive somewhere 😊

 

lots of love 

Tricia X

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Re: May 2020 Chemo Starters

Hey Laura

 

For sure meeting a group of women on here who are starting out at the same time to share is super helpful. I hope your treatment tomorrow (or port ) goes ok. Keep us posted.

 

I have a super good friend who is a nurse and works at Macmillan. She told me the weekly treatments are great as less invasive to immune system so it's great you are receiving these. Are you going by car to get to the clinic or public transport?

 

We really miss London. Lots of friends and family still there so we visit regularly.  However, we wanted more space which is why we came to Yorkshire.  Now we can walk from our house onto the Moor and although it took some adjusting we love it here. Right now we are blessed with a garden which is super awesome having my 3 kids at home during lockdown. We've kitted it out with a sandpit and massive paddling pool! 

 

I've just ordered some turbans and wraps as opted not to bother with cold cap (I'm really sensitive to cold) Anyone else got good recommendations for these? I've found some great ones on Etsy.

 

Ali x 🌈💙🏵🌷

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Re: May 2020 Chemo Starters

Hi Polly.

'Welcome' to this train journey none of us wanted to board! Sucks really, doesn't it?

I think the support on here is freaking invaluable. I'm feeling a little sorry for myself - had first treatment earlier on today. 

 

I'm also getting threads, replies and names mixed up, so (to everyone) if I forget or get confused or miss a message agopolies in advance (deliberate spelling error!)

 

Denial is totally normal (and, I would suggest at times necessary). I was absolutely fine yesterday and day before.....hitting me now!

 

Take care and love to everyone here xx

Fiona 

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Re: May 2020 Chemo Starters

Hi everyone,

My name is Polly, I’m 44yrs old and I was diagnosed with bc on the 19th March. I’ve got stage 2, grade 3, oestrogen and progesterone pos and her2 neg. So far, I’ve found this all surreal and that I’m actually slightly in denial. Don’t get me wrong, I’ve cried many tears but more so for my 3 children and also the guilt for not being at work as I’m a key worker.

Since diagnosis I’ve been at 4 different hospitals for different parts of the process and that’s mainly due to covid 19 so I’ve not really had a chance to meet my team so to speak. I’ve had surgery,  given zoladex and I take letrozole. Side effects were awful last week but they’ve all since passed.

Today I had a muga scan before chemo starts next week.  Today, reality hit me that this is actually real and I’m about to board a train for a journey I never ever imagined myself being on! So this shizzle is very real and I’m so glad that this forum is here for us all to talk about our worries and the stage that we are at.

Take care of you all and looking forward to the support we can give each other xx

 

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Re: May 2020 Chemo Starters

Hi Laura_k,

just read your post.  Sorry that you have found yourself on here joining other bc ladies 💖

just wanted to say that last year i was also on Paclitaxel once a week for 12 weeks,  Carboplatin every 3 weeks for 12 weeks and Filgrastim tummy injections as i was also diagnosed with TNBC.  I had my surgery first then my chemo.

just wanted to say good luck and stay positive,  a day at a time 💖

if you want to ask me anything then just ask.  Mini mad xx 💖💖

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Re: May 2020 Chemo Starters

Hey Ali,

You’re welcome, whilst only one persons experience, I hope by sharing it helps ease others’ anxiety. 

Initially I’m on weekly cycles of taxel and carboplatin for 12 weeks, subject to blood counts staying good 🤞🏻 

I don’t have a PICC line. I think they’re going to fit a port tomorrow though. Last week they just did by canular. Yeah a lot of my pre treatment consultations have been over the phone to minimise exposure. I’ve been able to gain a lot of info and reassurance on these calls. My Oncologist is brilliant, and she’s very witty. I get to meet her face to face tomorrow which will be good. I think it’s so important to have a sense of humour going through these journeys. 

Oh cool, how did you enjoy London? 15 years is a long time, how are you finding life in Yorkshire now? I’m being treated at the London Clinic in central London. Bit of a trek from home each time but the care I’m receiving is fantastic. I’m so grateful. 

Its sounds like you have a lot going on at home already, without adding this stress into the mix. But you’ve got this 💪🏻 and you have this forum for support now too.

Have a good evening ladies x 

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Re: May 2020 Chemo Starters

Hey fiona

 

That's fab that you have completed the first cycle. Awesome news.

 

Hope you are resting and doing ok?

X

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Re: May 2020 Chemo Starters

Hi

Great stuff! Glad you’re home safe and sound from cycle 1. You’ve now faced the the unknown and come out the other side! 💪🏻 

Ah thank you, that’s very kind of you to say. I really hope it helped. Yes the first evening after chemo is an interesting one! My boyfriend said I sounded drunk for a couple of hours after we got home slurring my words and what not. It was very entertaining! I had a headache and felt a bit shakey / jelly like, but I think that was mostly linked to the fact I’d been in the hospital for 7 hours and was only given a light lunch so I was starving! Yeah I would agree you’ve most likely got a stress / tension headache from the stress and anxiety of the day. You should be pretty well hydrated right now from all the saline! 

Get a good meal down you and some rest and take each day at a time over the next week. Each one will feel different. 

Take care,

Laura x

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Re: May 2020 Chemo Starters

Hi Laura

...Fiona and Tricia too 😘

So great to get your insights Laura. Am so pleased you are feeling relatively good following your first cycle. Are you doing chemo every 2 weeks? 

I'm in North Yorkshire and here my hospital has agreed to do a consent meeting by phone on friday to reduce my number of visits. Then Monday I get a picc line fitted (do you guys have these in already?) And Tues I will have first drugs. I'm planning on 3 rounds of EC then 9 weeks of paxitaxil . I've already had a mastectomy (which was fine btw. It was 5 weeks ago and I've totally recovered)

 

My GP spoke to hospital for me who agreed for me to have someone with me for first round as I have been feeling SO anxious about it. With my 3 little children at home I'm not sure how this is going to work for me over coming months. I do have a partner who is amazing but he is also trying to rescue his business from folding during the pandemic (I've had to stop work completely and we are both self employed so the timing is not great!)

 

I'm trying to focus on one day at a time and so reassured by your experience Laura. Which hospital are you at? We lived in Hackney for 15 years and only moved to Yorkshire 5 years ago.

 

Wishing you all a peaceful and restful evening

Ali x